Wednesday

Assessing my muscle disease

I am off to the specialist tomorrow.
That means today, and this week, I am assessing what I am up to as far as my health is concerned, specifically my myositis.
My muscle disorder causes weakness and pain and muscle wasting.

Myositis is an autoimmune disease caused by inflammation of the muscles.  I have been told I have Polymyositis which causes muscle weakness in the muscles closest to the trunk of your body including the upper arms and upper thighs.
Other symptoms include:
  • Fatigue after walking or standing
  • Tripping over
  • Difficulty getting to a standing position
  • Fatigue after walking upstairs
  • Trouble swallowing
So what will I be discussing with my specialist includes the new symptoms I have which include:
  • extra weakness noticed when trying to lift things
  • more frequent tripping (but not falling)
  • memory concerns
  • extra weakness in my chest
  • pain behind my right eye, right ear and on the base of the skull
  • increased finger and hand weakness with turning keys, using scissors, holding knives, chopping food and opening cans.
  • more tingling and numbness in lower arms 
I will be taking this list with me. Another thing I have found that I think is extremely useful 10-point functional rating scale for patients with inclusion body myositis (IBMFRS) which is posted here.

Tuesday

Inclusion Body Myositis–Functional Rating Scale (IBM - FRS)


1. Swallowing


– 4 Normal


– 3 Early eating problems—occasional choking


– 2 Dietary consistency changes


– 1 Frequent choking


– 0 Needs tube feeding


2. Handwriting (with dominant hand prior to IBM onset)

– 4 Normal

– 3 Slow or sloppy; all words are legible

– 2 Not all words are legible

– 1 Able to grip pen but unable to write

– 0 unable to grip pen
 

3. Cutting food and handling utensils

– 4 Normal

– 3 Somewhat slow and clumsy, but no help needed

– 2 Can cut most foods, although clumsy and slow; some help needed

– 1 Food must be cut by someone, but can still feed slowly

– 0 Needs to be fed


4. Fine motor tasks (opening doors, using keys, picking up small objects)

– 4 Independent

– 3 Slow or clumsy in completing task

– 2 Independent but requires modified techniques or

assistive devices

– 1 Frequently requires assistance from caregiver

– 0 Unable
 

5. Dressing

– 4 Normal

– 3 Independent but with increased effort or decreased efficiency

– 2 Independent but requires assistive devices or modified techniques (Velcro snaps, shirts without buttons, etc)

– 1 Requires assistance from caregiver for some clothing items

– 0 total dependence


6. Hygiene (bathing and toileting)

– 4 Normal

– 3 Independent but with increased effort or decreased activity

– 2 Independent but requires use of assistive devices (shower chair, raised toilet seat, etc)

– 1 Requires occasional assistance from caregiver

– 0 Completely dependent

 
7. Turning in bed and adjusting covers

– 4 Normal

– 3 Somewhat slow and clumsy but no help needed

– 2 Can turn alone or adjust sheets, but with great difficulty

– 1 Can initiate, but not turn or adjust sheets alone

– 0 Unable or requires total assistance
 

8. Sit to stand

– 4 Independent (without use of arms)

– 3 Performs with substitute motions (leaning forward, rocking) but without use of arms

– 2 Requires use of arms

– 1 requires assistance from a device or person

– 0 Unable to stand


9. Walking

– 4 Normal

– 3 Slow or mild unsteadiness

– 2 Intermittent use of an assistive device (ankle–foot orthosis, cane, walker)

– 1 Dependent on assistive device

– 0 Wheelchair dependent
 

10. Climbing stairs

– 4 Normal

– 3 Slow with hesitation or increased effort; uses hand rail intermittently

– 2 Dependent on hand rail

– 1 Dependent on hand rail and additional support (cane or person)

– 0 Cannot climb stairs


This 10 point functional rating scale was developed by modifying
the ALS functional rating scale.  The highest score possible is 40, and the higher the score the better the person is functioning. Find out more about this rating scale.


 

Wednesday

Association between Polymyositis and adult coeliac disease

Gastrointestinal investigation of 14 adult patients with polymyositis disclosed coeliac disease in five. The inflammatory myopathy in our patients is not the same as the myopathy often seen in coeliac disease with osteomalacia. One patient has been free from both gastrointestinal and muscular symptoms for 5 years on a gluten-free diet alone. The findings strongly suggest an association between polymyositis and adult coeliac disease.
K. G. Henriksson, Claes Hallert, Klas Norrby and Anders Walan

Published in Acta Neurologica Scandinavica
Volume 65, Issue 4, pages 301–319, April 1982

Berlin Conference

Personally I have known I could not tolerate wheat for over 18 years and have been on a gluten free diet before being diagnosed with Polymyositis. I am now on a strict gluten free diet and still have both gastrointestinal and muscle symptoms, though these symptoms are much reduced.

Saturday

My symptoms are always changing.

I am sick of pain and new pain and new symptoms and changing symptoms and blood tests and medical tests and not knowing if something new is brewing or just the same old myositis which always seems to be changing.
I have extra and extreme tingling in my toes and milder but similar tingling in my lower legs. My liver blood tests are raised and I have nausea and stomach pain and loss of appetite and loss of taste and cannot eat fried foods or alcohol. When you know you are susceptible to autoimmune disorders you do tend to think that what you are experiencing is probably related.

Only time will tell...
I am having a nuclear medicine test on Tuesday called a HIDA scan which is a procedure used to diagnose problems in the liver, gallbladder and bile ducts.
A radioactive chemical will be injected into a vein in my arm to see if I have Gallbladder inflammation, a bile duct obstruction or an abnormalities in the bile ducts.

GALLBLADDER: Gray's Anatomy 20th ed. A pear-shaped organ located under the liver that stores and concentrates bile secreted by the liver. From the gallbladder the bile is delivered through the bile ducts into the intestine thereby aiding the digestion of fat-containing foods.

Friday

Living with myositis: What you can do to help yourself Part 1

Living with chronic illness strategies

Living with myositis, or any chronic illness,  requires certain adjustments. It is important to make healthy choices for ourself - no one else will, no one else can. It is up to us to keep our symptoms under control and take control of our own health with the advice of professional health providers.
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.

Things we need:

  • Education. Learning about our illness. This allows us to make informed decisions about all aspects of  our life and treatment.
  • Personal Responsibility. Taking action including the basics of taking medication as prescribed and keeping appointments with doctors and the sometimes more difficult tasks such as asking for help from others when we  need it.
  • Perspective. Having a wider perspective on the disease is important: painful times won't last forever and it may be difficult to believe things will get better again unless we have this wider perspective. Also realising there are people worse off than ourselves really puts our disease in perspective.
  • Self-Advocacy. This means being an effective advocate for yourself so you can get the services and treatment you need.
  • Support. Support from others is essential to feeling less lonely and enhancing the quality of your life. Having someone to talk to who understands is important and this could be through a forum such as Daily Strength.
  • Hope. Believing that you can cope is essential. With good symptom management, and pacing and understanding your limitations, it is possible to experience long periods of feeling okay, even good. 

Thursday

Stress an Illness

stress and illness presentation
Some important points I got from this presentation were that:
  • your body does not care if it is a big stress or a little stress
  • the adrenals and cortisol play a large part in stress
  • that we need to address the stress, even for a minute as it comes upon us
  • there are many ways we can help ourselves including humour, mindful breathing, music, exercise and meditation.

Stress, Immunity and Your Health

National Myositis Convention Orlando Florida
by Sheralee Beebe
Holistic Health Practitioner

Monday

Learning to express your needs when you have chronic illness

I am trying to learn to recognize my own needs and the benefits of voicing them to others. This is both with my family and in the wider community. Is there really anything wrong with asking for the shopping bags to be carried out to the car?
I am also trying to learn about the best ways to ask for help. The following talk is from people with Myositis and their challenges of expressing their needs as well as some helpful tips on self-advocacy.
Self-Advocacy When Coping with Myositis

Friday

About chronic disease: muscle weakness

Mother Combing Child's Hair painted 1879 by Mary Cassatt
 
I can longer brush my own hair with ease. It is a major effort which causes pain. I need someone to brush my knotted hair.

I can no longer cut the veges with ease. It is difficult and dangerous. I need someone to cut my health giving foods.

I can no longer hang the washing on the line with ease...

You get the idea? I could go on but I think you get the idea. I don't really want to whine on and complain. I know there are many people out there with worse problems than mine. It's just that I had a realization: How can I be a mother to my children if what I really need is a mother. How can I be a mother when I need a mother?

Myositis Outcomes from NINDS

The DM Disease Activity Collaborative Study Group, and later the International Myositis Outcome Assessment Collaborative Study Group recommended development of outcome measures in all forms of IIM  - Idiopathic Inflammatory Myopathies -  in adults and children, and coordination and facilitation of clinical trials in adult and juvenile myositis. 

The main reason stopping this group from undertaking large multi-center trials in myositis is the lack of validated disease activity and damage indices. 
 For this reason, the first in a series of two workshops were held to address the following: 
1. Use of the core set of outcome measures recently identified to develop a myositis disease activity index, a preliminary definition of improvement, and damage index, and 
2. to develop consensus on issues related to the general conduct of clinical trials, extend of improvement and damage, development of inclusion and exclusion criteria and appropriate therapy, and recommendations in regard to the trial duration, dropout criteria, safety assessment, and post-trial evaluations. NINDS 2001

Since this was written things have progressed more on this soon. (Sorry, my research is slow)



Saturday

What is myopathy

The Muscular Dystrophy Foundation has some good fact sheets about myopathy including information about the three main types of inflammatory myopathy - Polymyositis (PM), Dermatomyositis (DM)and Inclusion Body Myositis (IBM) in the one pictured here.
To find out

  • What are Inflammatory Myopathies
  • What causes Inflammatory Myopathies
  • What are the forms of Inflammatory Myopathies
  • Can Inflammatory Myopathies be cured
  • How are PM, DM and IBM diagnosed
  • What happens to someone with these diseases
  • Treatment
  • and more
please click on the link below.


 Facts about Inflammatory Myopathies - Muscular...
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ACTIVITIES OF DAILY LIVING (ADL) CHECKLIST

The Checklist is provided to help you think of all the tasks you do and may need assistance with. This checklist is something you may find useful if you are starting to have difficulties with daily activities such as personal grooming like shaving or brushing your hair or preparing and cooking food.

I do have problems with these and like some of the suggestions:
Do you use or would you like to use adaptive devices to prepare meals?
For example:
• Rocker knife
• Mini-food processor/chopper
• Adapted spatula
• Color coded burners and knobs
• Digital timer
• Lightweight unbreakable bowls
• Lower work surfaces

This checklist is not only good to face facts and clarify these concerns for yourself but it may help your doctor, specialist or rehabilitation specialist of physiotherapist to understand where you are and how to offer help.
Keep in mind though it is not specific for Myositis.

http://www.oregon.gov/DHS/STEPS/docs/module1-handouts.pdf

If anyone does know of a checklist that is specific for muscle disease please let us know. Thanks.

Monday

Online current study into Myositis

If you have Dermatomyositis (DM) or Polymyositis (PM) and are in the USA, The Henne Group in San Francisco is doing an online study in May (dates to be determined) paying $100.
Contact Tom Mayer at (415) 348-2911 or email tmayer(at)thehennegroup.com
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